What is your experience with HT?

Hi Steve,

I wouldn't know whether this is any better or worse than any others but I am on Prostap injections. These are injected into my belly every 12 weeks. So what I think ('think' because I've also had chemo and radiotherapy with their associated side effects therefore I cannot be sure which treatment is causing what) it is doing to me is:

(1) Hot flushes or more like hot sweats, in themselves not too troublesome but they do wake me up every 1-2 hours every single night which in turn makes me more knackered. When I wake in a sweat I then need to go have a pee.

(2) Loss of libido.

(3) It's also caused my bits to shrivel up but at least they are still there!

(4) Loss of strength, this is becoming more noticeable as time goes by e.g. just lifting heavy objects like the dog crate in and out of the car.

(5) Loss of muscle - I notice it in my legs, walking up hills feels like my legs are like lead weights. I do long walks up hill daily, but my leg muscles do not seem to improve (although they must do even a bit surely!). And, as we are getting into better weather I am yet to find out the impact of this on mountain biking, but as it is I know that the strength I need in my legs to get my out on the trails is not enough (yet).

(6) I am increasingly getting joint pain, especially in my ankles which were already flakey due to playing too much footy years ago. I am also on alendronic acid and adcal to help counter the impact of HT on my bones.

(7) Weight gain, I've put on 10 kgs since I was diagnosed 9 months and from when HT started. I'm making efforts to address this with sensible diet and exercise, so far I think that I have managed to stall the weight gain and quite pleased with that. The extra weight goes on the belly like a typical beer belly, also my bum feels fatty/spongey.

(8) And also, puppy fat on my face which actually I think does also appear to have stalled.

(9) Fatigue/lethargy. It sometimes takes real determination to get motivated to get things done. And, I find that I get exhausted easily when previously I wouldn't e.g. mowing the lawn.

On the plus side I have not developed any noticeable Moobs with prostap and also as Lynne points out another plus is the 12 week intervals with flexibility of a few days around injection day do allow me to plan holidays 😁.

I hope I haven't put you off 🧐, it isn't all bad! All the best with your decision making.

Spongebob.

Edited by member 27 Mar 2024 at 15:37  | Reason: I put months instead of weeks - DOH!

Steve, It seems common practice in the UK to offer six months Bicalutamide with SRT. I took it in tablet form (150mg) and found it reasonably tolerable. Libido takes a bit of a hit but it's not non existent. I ate my normal diet and didn't gain any weight and there were no hot flushes. Breast buds and sore nipples did appear after 2 months. I took Tamoxifen to try to counter it for the remaining 4 months. It didn't seem to make too much difference but they gradually disappeared over a period of about six months when the Bical ceased.

Hi Steve,

I have my Prostap injections every 13 weeks on the dot. I wouldn’t wish this on anyone, although some men dont seem to get many side effects. Bicalutamide seems to me to be a good option, I’m not really sure why they don’t use this for those on HT/RT route as primary treatment.

Derek

I was talking with a very senior prostate cancer oncologist. They don't have much control over which GnRH agonist (Zoladex, Prostap, Decapeptly) is used. If their hospital administers it, the hospital decides based on cost. Oncologist can only change this if it isn't working for a particular patient.

Similar story with your GP surgery, if you're injected there. If your surgery is a moderate size in terms of numbers of patients, they may buy one of them in bulk which reduces the cost for that one, but makes the others relatively even more expensive. Even if they don't buy in bulk and you collect from a pharmacy, they may still have a strong preference due to staff familiarity with administering it. Again, oncologist can override this if the preferred one isn't working.

Having said that, I asked my GP why they used Zoladex, and they said it was because it caused the fewest injection site issues, but yes, they buy it in bulk to get lower price. (For some unknown reason, I wasn't included in the bulk purchase, and mine was prescribed via a pharmacy, which also made it easy for me to pick it up and do my own injections.)

To start with they do not prescribe Bicalutamide in France - he said that there was no clinical evidence of efficacy which seemed very weird when it is the go to in the UK. He gave me a choice of injectable hormones so I chose Decapetyl with 3 month injections instead of the 6 month one.

I asked about Moobs and so he has given me a prescription for Tamoxifen with strict instructions to ONLY take it if I feel tingling in the breasts after the hormone injection.

He also prescribed Serelys which is a non-prescription medicine to relieve hot flushes - had to pay for that so I hope it was €30 well spent LOL

So I now have my appointment for a prelim CT scan on 6th May and RT treatment starts on 22nd May with 33 daily treatments giving a total dose of 66 thingimajigs.

Now I have to translate all the docs he gave me regarding emptying of bowels (no enemas), drinking 1.5L of water, having a pee, drinking 0.5l of water 10 minutes before the RT and holding it. Oh and the list of about 30 potential side effects (CYA)

Anyway, all good and I'm scheduling the first hormone injection for Friday am along with the testosterone blood test.